Daily Archives: April 5, 2012

Judy Miller has an interesting post on ambiguous loss and some good points regarding adoption and how the ambiguous loss can be felt at different times (ebbs and flows) over an adoptees lifetime. I have heard the term but had never taken the time to understand the parameters of what was included in the term. It was interesting to read and one of the links goes to a book by Pauline Boss. I may put it on my list of books to read. The Amazon page has this to say about the book:

“When a loved one dies we mourn our loss. We take comfort in the rituals that mark the passing, and we turn to those around us for support. But what happens when there is no closure, when a family member or a friend who may be still alive is lost to us nonetheless? How, for example, does the mother whose soldier son is missing in action, or the family of an Alzheimer’s patient who is suffering from severe dementia, deal with the uncertainty surrounding this kind of loss?

In this sensitive and lucid account, Pauline Boss explains that, all too often, those confronted with such ambiguous loss fluctuate between hope and hopelessness. Suffered too long, these emotions can deaden feeling and make it impossible for people to move on with their lives. Yet the central message of this book is that they can move on. Drawing on her research and clinical experience, Boss suggests strategies that can cushion the pain and help families come to terms with their grief. Her work features the heartening narratives of those who cope with ambiguous loss and manage to leave their sadness behind, including those who have lost family members to divorce, immigration, adoption, chronic mental illness, and brain injury. With its message of hope, this eloquent book offers guidance and understanding to those struggling to regain their lives.”

I have to say I was amazed to see Brain Injury, Alzheimer’s, and Dementia included, but I don’t really know why I was surprised. I have said many times I miss my old brain. A brain I trusted so explicitly to work like a well-oiled machine, guarding and protecting me from making mistakes. That now I have a brain I can’t rely on anymore. When I first tried to talk to my peers they would just tell me not to stress, that I was now just like they were. The problem was I didn’t want to be like them, I wanted my old brain back that made me, me. The person I was before. The brain that filed everything correctly available for recall on demand. A brain I knew would analyze the pro’s and con’s and risk factors and guide me through my decision-making in everything I did, from the little decisions to the big decisions. A brain I didn’t have to worry would miss that small piece of the puzzle that would turn out to be the key piece of the puzzle in making a decision.

Have I adjusted? Of course. Yet I have also worked daily, including blogging, to make my brain more like it was before, and I have succeeded to a point, but there will always be differences and feelings of loss at times. One of my doctors describes my way of talking in that I take the long way to get there, because I can’t form a cohesive sentence in the right words that covers everything like I used to. So you get a paragraph, where a sentence or two would do before, and still from time to time, it is taken wrong. If I choose to use a sentence without mentally editing it in my head first, it comes out like this request I made to a close friend. “Can you turn on the lights on the dash” which actually meant “Can you light the candles on the mantel“. A request that does not work unless someone knows you well, and can translate your intentions. I knew I had said the wrong words and so did our friend, but he knew I wanted him to light the candles, and did it without clarifying what I wanted, because he knew me, and knew what I meant and that I used the wrong words at times.

My second thought is that my husband also has had to deal with this type of loss in several ways. The loss of who I was before and the long-term implications. In how it impacted him losing who I was before, I saw it during the first couple of years, coming out in short bursts of anger at times when I couldn’t remember something, but was sure I did, and I would argue the point even though he was right. Or the frustration he felt at having to be patient when I couldn’t get the simplest answer or statement out of my mouth. Trust me, it is the most annoying thing to wait for me to get one word at time out of my mouth, with long gaps of time in-between, when all you want to do is provide the words and make it all better, but know that won’t help me relearn to speak. He did his best, and the majority of the time he was stellar and dealt with it incredibly well, but he had his moments, especially after a long day at work. It actually made us stronger and more honest with each other, which was/is a good thing.

My final thought is that because “I” look fine and don’t have visible physical challenges from my stroke no one can see that I am different. I am judged on my outward appearance, or the me they knew before. Far too many people (myself included) judge others on the surface and choose to only see the surface, not what lies beneath, or what differences the individual may have. I did that to mom yesterday on the phone, even though I know she is at the point where the type of conversation we were having, was moving beyond her current capabilities to grasp. It was making her angry, much like I was in the first couple of years after the stroke. It was my fault because I know she isn’t able to get there anymore, but in the moment, I expected her to be the way she was before. I have to do better and catch myself before I do it again, simply because, I don’t like it done to me.

Quotes

“I have learned that to be with those I like is enough”
― Walt Whitman

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Oct 2014: You may speak freely, but please try to use words that everyone can hear about your individual story or view. If you don't, those who can actually benefit won't hear it, I want to see change in my lifetime. I may refuse to approve certain comments.

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